October 2001 I don’t find any perverse pleasure posting this particular pic, but this is what EB is. 😓 In the book I write about the day that Nicky fell in Kindergarten. This photo was taken that day. Here’s what I wrote: “One morning in October, just a couple of weeks after Nicky got his Aide, I got a call from the school I was hoping I would never get. Nicky had tripped and fell head first on the matRead More →

My son Nicky was diagnosed with Epidermolysis Bullosa (EB) 12 hours after his birth, a month later we received the official diagnosis of “Recessive Dystrophic”. Here are my top 6 things to know about Epidermolysis Bullosa. 1. Epidermolysis Bullosa is a genetic skin disorder. Epidermolysis Bullosa it’s an umbrella term for a group of genetic skin blistering disorders. The condition arises from genetic mutations present at birth, which can be inherited either recessively or dominantly. Different mutations cause the differentRead More →

As per Nicky’s wishes, I am posting a few pictures I took a week ago of his left leg/foot. He’s been trying so hard to start walking again. Doctors and others have treated him as if it’s something so easy to walk, his EB team wants him to go to rehab, something he sooooo does not want to do (you can read about that at his CaringBridge Journal October entry). He wanted me to post these pictures to show whatRead More →

I normally do updates on everything ‘Nicky’ on his blog at Caringbridge, and I do try to post there at least once a month, but sometimes I feel it’s a bit constrictive. A lot of my storytelling includes photographs and I am unable to post photos over there. Well, you can post ‘some’ photos, but there are limits. You can only post one per blog and it shrinks it down to a minute size. There is also a limit ofRead More →